On a weekend I wanna wish it all away, yeah.

Day one of no prednisolone has been a small disaster. With most drugs, the effects stay in your system for a little while, but my experience with steroids has been very different; the day after the final dose is taken, everything returns. It’s what happened with the rash on my hands and feet. Less than 24 hours and I was covered again. So it’s no real surprise that today revolved around a renewed pain and stiffness – especially stiffness. I’d forgotten how limiting it can be.

I’ve been sleeping in the spare room recently, and last night was no different. There are a number of factors as to why – the air is cooler in there, the little white single bed has an orthopedic mattress, I feel safe surrounded by “my things” (it’s almost a copy of my old bedroom at my mother’s house; entirely subconscious on my part but it does give me a recognisable haven to retreat to) and I also feel safe knowing the only person to witness the pain is myself. After all, just because it now has a name and a reason, doesn’t mean I’m not still somewhat ashamed to be seen squirming around like a wounded animal. I feel horribly like a burden when S hears me complaining, so I try to limit how often I open my mouth on the subject. It’s difficult. On days such as today it envelopes my entire being.

 

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So. S and I have lived in the flat for almost a year now. Crazy how time passes in such strange ways. The last twelve months have been some of the hardest of my life, yet I got through it somehow. I confess to having no idea how that happened, as I’ve been stuck behind walls of varying painkillers, watching the world go by. As it is, the morphine is doing very little for the ankle pain – the discomfort and stabbing feelings seem to come from inflammation, and it’s only going to get worse now I’m off the prednisolone. I can’t take NSAIDs either. My mother is going to speak to my rhuematology nurse next week to see if there’s anything at all they can do before I see the consultant in October.

I’m just not convinced I can keep doing this. Waves of pain. Brief relief, then it all comes back, worse than ever.

I’m feeling a little despondent.

It could have been a brilliant career

It seems keeping up with writing isn’t something I’m very good at now. I’m not sure I understand it; the time is there, but it all seems like such a chore. It feels a little unfair saying that since this blog has been a lifesaver for me on more than one occasion, but the days of typing thousands of words regularly seem to have disappeared. Perhaps it’s simply a lack of concentration – my GP has doubled the prescription of slow-release morphine and it’s a knockout dose, even for me.

However, I do feel like writing a little tonight, if only to distract from the nagging coming from the Infamous Ankle. The prednisolone course finished yesterday; it hasn’t been particularly effective for a couple of weeks now, since the dose reduced to one a day, but I’m still worried what the next few days will bring. The morphine helps but only does so much, as the pain appears to be coming from the actual inflammation of the tendons. I now know that’s a normal symptom of psoriatic arthritis, and I’m feeling slightly bitter that there were so many signs of this over the past two years. So many signs. They could have had me on steroids earlier. The prednisolone exceeded all expectations on the higher dose and I was able to walk almost normally and my sleeping patterns improved hugely. For the first time in years I was able to see my ankle bone, and my shoes fit properly. The joy on the first day I could walk to the local shop was… well, I was very, very happy. S and I even took a walk around the block, as I haven’t been able to do that once since we moved in almost a year ago. I missed a lot, all because the doctors missed everything.

Still… can I afford to be bitter? Probably not. I’m going to be stressed enough with the inevitable return of the ankle swelling without piling more problems on top.

 

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I also finished the methotrexate course last week. That drug has been a… nightmare. A pure case of the cure being worse than the illness. I’ve been repeatedly asking everybody why I’m putting myself through the side effects – vomiting, constant nausea, sweating like a pig, sleeplessness, mania – even though I know it was my choice. I didn’t rush into taking MTX; I considered it over a week while I waited for x-ray and blood results to check I was able to take it in the first place. I considered it incredibly carefully.  In all my years of medications, I’ve never taken such a dangerous drug and it was a difficult decision. Still… I think I made the right one. If it slows the progression of the disease, surely it’ll be worth all the sleepless, sweaty nights with a bucket by my side and a helping of paranoia?

I hope so. Strangely, I feel even worse for not taking it this week. I just hope this isn’t a sign of things to come.

Wrong way on a one way track

Can you help me remember how to smile, make it somehow all seem worthwhile?

How on earth did I get so jaded?

Depression is a cruel, cruel illness. It robs you of the ability to give a damn.

I find it incredibly difficult to write about depression with hindsight. It’s far easier to force myself to open the laptop when I’m feeling utterly sunk in misery and numbness, and explain it in real time. Otherwise… I can’t begin to describe how it feels to be trapped so far within myself that the outside world is just a whisper in the background.

For weeks – months – I have slept during the day and lain awake at night until the sun rises. Attempts at righting my sleeping habits have been pointless; the pain dictates what I do, and when I do it.

sleeping in black and white

So, am I free? Almost. Today, I managed to wash the dishes, tidy the bedroom, water the plants and do two loads of washing. That’s that most useful I’ve been in months. Strangely, I haven’t needed a single painkiller today up until thirty minutes ago. Last night, my foot was swollen to the point where the outline of the damaged tendon was clearly showing, so I don’t know why I’ve been granted a small respite today. All I can assume is that my plan of keeping my foot off the floor as often as possible (I’ve invested in crutches) is working. True, I hate having to stay on the sofa, and it’s horrible knowing spring is somewhat here but I can’t go for a walk or even down to the garden (too many holes in the pathway), but perhaps it’s paying off. It has to be better than last month’s buckets of ice water and boiling hot towels.

I’m trying everything. Which is… a good sign, I think. Over the past week I’ve started thinking about the future, and that’s something I didn’t think I’d feel happy feeling. I’d given up entirely, and I almost felt safe there. Does that make sense? Failure is… easier, somehow.

On Saturday, I had an MRI at Liverpool Hospital. The week before I had ultrasounds at the same hospital. In nine weeks, I see the rheumatologist again. Until then, my GP is giving me regular codeine prescriptions and, if I need them, I can ask for morphine patches. I’m wary of doing so; I don’t want to leave myself with no options. I get used to opiates far too easily.

codeine

So… the codeine. It’s going okay, actually. There have been a few days where I’ve taken more than the recommended dose, but that was purely through pain. So while I’m still not entirely responsible… I’m learning. I’ve learned a lot of lessons recently, and one of those is that painkillers are important. When you’re in so much pain that you could rip your own face off, the last thing you care about is abusing painkillers to escape the fear. You just want to escape the pain, and let them do the job they were designed for.

Oh, it’s not easy. I’m constantly on my guard, and I know it’s something I’m nowhere near over. Addiction is… well, it’s an addiction. It’s come back far too many times for me to ever say I’m over it.

They’re not perfect. Tramadol was much more effective, but I couldn’t be doing with the apathy and constant nausea. So I still have pain, it just becomes easier to ignore. That’s why opiates are so perfect. They don’t remove the pain, just stop you caring.

Like depression.

One day, perhaps this will stop happening. I’ll stop losing it, and life can run more smoothly.

 

So why don’t you slide

Earlier, S asked if I fancied a takeaway – curry from our favourite restaurant – and I agreed. Later he went out with a friend to buy some tools. They’re working on the basement beneath our flat, as technically that’s included in the rent. It’s currently filled with the last owner’s belongings; stacks and stacks of paintings, canvas, frames, lamps, chairs, books… Bob was a hoarder, and a painter. His work’s pretty good actually. Now he’s dead and his wife is in a nursing home (she went downhill very rapidly when he died), somebody has to clear it all. The basement is pretty big, taking up most of the floor space of the house, so it’s a mammoth task.

Anyway, while they were out I got a call from S. He asked me if I wanted to go to the restaurant with his mates instead of getting a takeaway.

Did I do the right thing when I said, “it’s okay, I’m not up to it. You can go along anyway”?

I wasn’t lying. I’m truly not up to it. I tried going for a short walk earlier, and by the time I returned, I was struggling to breathe and sweating like crazy. It’s been so long since I’ve had ‘proper’ exercise. That walk used to take me five minutes. Today, it took thirty.

Straight away S’s tone changed; the first time I’ve ever really heard it do so. He said, “oh. Okay. But we were going to have a takeaway.”

I shrugged him off, “it’s fine, I’m really, really not up to it. We can do it another time”.

He agreed, but… he didn’t sound happy. It’s only when I ended the call that I began to feel that familiar twinge of panic.

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Oh god. Oh god oh god oh god you fucking idiot oh god oh god.

I have never once done something (to my knowledge, anyway) to make S angry or disappointed. Unlike my relationship with O, I’ve managed to keep my irrational emotions in check; at least until I’m alone. I’m so determined not to fuck this up. I know it’s classic BPD to say, “oh, I love him so much, he’s my everything, I want to be with him forever” but all that’s got me in the past is a string of disastrous relationships and far too much bitterness. I almost have my head around that now, and the medication certainly helps me keep the more extreme aspects of my behavior in check. So while I know that these feeling might be BPD tricking me and that mental illness has a habit of making me cling to somebody like fuck… I want to believe this is real. I’m pretty sure I know, deep down, I love S with all my heart; how could I not? He’s the only man who has never condescended me. Who has never given me reason to suspect him of wrongdoing. The only man who I’ve felt comfortable enough with to let the mask slip.

I know I love him.

And now I’m scared.

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So what did I do? I went straight for the Tramadol.

I’m now sitting at the kitchen table, trying and failing to calm myself with a joint. The urge to crawl into bed and hide under the duvet is overwhelming.

There is a light that never goes out

When I lived with my mother, there were often times when the only source of entertainment was to write. There are only so many cheap horror films someone can watch before they all drift into one, and only so many charity shop books you can buy before realising you’ve read pretty much every regularly-donated text. Back then, my days were entirely upside-down; sleep during the day, and lie in bed at night, typing away. It’s because of this – the ease of settling down to write in the past because the nights were impossibly long – that I’m now finding it difficult to balance my everyday life and the virtual world of my blog.

On the whole, my life isn’t much busier. Since moving in with S, I haven’t taken up any time consuming hobbies, and days rarely get so exciting that I fall into bed, exhausted. In fact much is the same; just with added domestic duties and a slightly better sense of night and day. I just find it difficult to juggle both living in a “normal” situation, and writing.

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Now, after months of half-hearted posts and putting off the important stuff, I’m stuck in a situation where I have so much to write about that it has become an impossible task. I bypassed the guilt long ago – I’ve been looking after myself a little, for once – but now… I’ve somehow got to squash it all into one post because putting it off is only making the problem worse, and I know that in the long run writing about all this is good for me.

Not only that, but I somehow have to try and make some sense, which isn’t the easiest of tasks on 200mg of Tramadol. I appreciate this post may be a little… disjointed. Trust me, it’s nothing compared to how my mind currently feels.

When I posted the Letter To My Consultant a few days ago,  I had actually already seen him the Monday before. My mother and I travelled 25 miles by taxi to meet with the specialist who had agreed to give me a second opinion. I had expected to fight to to be taken seriously – again – but I can honestly say that he was never anything less than courteous, and I left the appointment feeling buoyed up by the simple fact of just being listened to. It’s all I needed. Someone to sit, listen, and offer advice. Once, I thought that the NHS was built around trying to help patients, but over the past few years my faith in it had slipped to the point where I didn’t even see a reason to have an NHS if they can’t achieve the most simple tasks.

Now, some faith has been restored. And all it took was for somebody to shut up for five minutes and actually listen to me.

It should never have been this hard.

Lot 40 - Alison Englefield Headings -Paranoia

I don’t yet have a diagnosis, but that no longer matters to me so much. The promise to try and control the pain is enough for now, and although Tramadol probably isn’t the smartest option for someone who fought addiction for so many years, it’s one which works, and while I’ve certainly been craving the pills, I haven’t abused them, nor do I have the real urge to. They’re important, you see. The only thing I needed to truly escape from was the physical pain, and Tramadol goes some way towards making it more bearable.

Also, S isn’t stupid. He knows of my addictions, and he knows it’s something which haunts me every day. In the past, nobody’s truly tried to take control over it, but S simply isn’t the sort of man who would let me abuse painkillers. Now we live together, it’s something I can’t really hide – the tiny pinprick pupils and staring into space are a dead giveaway – and although I know I’ll always struggle with the urge, I suspect S will never go easy on me if he finds I’ve been abusing them. I wouldn’t want him to go easy.

The consultant said that if Tramadol doesn’t work, the next step is morphine patches. Again, he listened.

So I don’t have a diagnosis, but there are a couple of conditions which are being bandied around. Rheumatoid arthritis. Psioratic arthritis. Psioratic seems more likely, based on where the pain in my fingers is and the nail loss I’ve been experiencing. Rather than just saying “well, it’s something, but we don’t know what” – which is what I’ve been hearing for years now – my consultant explained that while they may never be able to fully diagnose me because rheumatic conditions can be so complicated, they will “do their best“. In this case, that means an MRI scan, ultrasounds on my hands and feet, referral to a pain clinic, and my first full examination since I started on the journey to find out what the hell is wrong with my body. I have begged for these tests so often in the past that I assumed I would have to do the same at this appointment, but I didn’t even have to ask. For the first time, I’m being physically tested. My first set of bloods have been done. They even did a urine sample, which my local hospital has never bothered with.

urine specimen

 

I came away from the appointment knowing a few things; that whatever it is will “most likely be lifelong”, that I will “probably always need pain relief”, and that there are doctors out there who still do their jobs properly.

I’m okay with it being lifelong. I feel like I’ve lived a lifetime of it already, so a few more decades can’t be much harder.

Maybe now I can settle. Enjoy living here. I’ve lived with S for six months, and so much has been ruined by my health. Maybe now… I can feel okay.

“Well, I had no confidence in my ability to dent another human’s life”

Sometimes it’s impossible to even think of a title to a post, let alone which words to use. Being stoned doesn’t help, but it’s the only way I’ve been able to cope today; it was either dope, or masses of co-codamol and a bout of self-harm. I figured weed was the safest option.

Where to begin? It’s past 2am, and I’m still furious from the orthopaedics appointment this morning. As usual, nothing was achieved – my consultant wasn’t even there, and I saw a junior doctor instead, who couldn’t do anything except repeat what I’d already been told at my previous appointment – and I’m furious. I’ve had enough. This officially isn’t fair, and I’ve stood back and let this happen over and over because I haven’t wanted to cause any problems.

Well, fuck that. I’ve been in constant agonising pain for over eighteen months. I can’t walk properly and need a stick most of the time. Ice? I can’t leave the flat if it’s even slightly icy, because I have no balance. I can’t sleep. I can’t exercise. It’s all I can think about, and even strong painkillers (which I’m doing my best to avoid, for obvious reasons) only take the edge off slightly. I’d gladly take back the colocystitis pain over the constant needles and cramps in my foot.

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www.thechinchilla.com

I got home, and cried. Smoked a joint and ranted to myself for a while. Mentally calculated everything in the flat I could possibly hurt myself with. Considered making myself sick. Ate half an egg sandwich then threw it out. As it is, I haven’t eaten since; I’m hungry, but the gnawing feeling in my stomach is comforting. It’s… control.

I feel very out of control.

Since S came home from work, he’s been cheering me up immensely; so I’m coping okay. I haven’t taken any codeine, or hurt myself. Oh, the urge was there – I thought about it the whole taxi ride home – but you see… if I hurt myself, I hurt S too. It’s strange for me to feel that way, because in past relationships I’ve never truly accepted that my tendency to damage myself could have any effect on my boyfriend. It wasn’t that I was being selfish, it’s just… well, I had no confidence in my ability to dent another human’s life.

I don’t want to hurt S. He’s my world. I know I can’t care about myself, but I adore S. I assume that much is obvious from my past posts.

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danielleflanders.blogspot.com

I’ve been thinking a lot about where I go from here, and I believe my only option is to put in a formal complaint of medical negligence. As much as I’m tired of fights… I refuse to go on being treated this way. From the first time I saw a consultant for PCOS, right through to today, I’ve had sub-standard medical treatment and every single condition I have has been made worse by lack of action and misdiagnosis. I don’t think any of this is fair, and I’ve got to stand  up for myself at some point.

And so, to hospital

I hate hospitals.

Really, really hate them.

Since childhood, I’ve been paraded around them for various reasons; hooked up to so many machines I hear the beep in my dreams. I’ve been sick on so many hospital floors, and each and every single hospital visit – be it a planned appointment or a trip to A&E – has left me a nervous wreck.

I’m not ashamed to admit this: I just can’t cope with it. The smell. The horrible lights. The feeling of vulnerability and the worry you’ll never sleep properly again. The strange faces and unpredictable noises… and the memories of the times I’ve been really, really ill. Vomiting up black stuff all over the polished A&E floor, tripping on morphine and hooked up to every piece of machinery in the world. Happily floating on a cloud of prescribed IV opiates, not giving the slightest damn about anything but going to sleep and not waking up again.

So yes.

I really hate hospitals.

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But I also hate being sick. Admitting to a phobia of vomiting sounds weak somehow; it’s hardly the worst thing to happen to a person, but it utterly terrifies me. I suspect it stems from years of bulimia; controlled vomiting is entirely different to actual sickness, and it’s the lack of control I can’t cope with. Vomiting for days on end and being unable to take my meds, wash, dress myself, eat, drink, or even sleep in the same bed as S… it all took its toll, and I ended up in A&E this morning, wired up to a drip and covered in heart monitor pads.

I admit, it wasn’t the plan.

I had an appointment with my GP this morning – to check up on my medications, which need to be raised or changed, how the pain is going… I didn’t make it, because I was busy concentrating on not vomiting in the taxi on the way to hospital.

If you’ve never been scared of being sick, you can’t imagine just how terrifying it is. Every movement, every sound, every thought even… if you feel nauseous, anything can and will set you off, and it’s utterly horrible when it happens. I’ve never vomited as an adult and not had a panic attack during. It’s not a pretty situation.

So I lay there. Sat up. Lay down again. Went to the toilet a million times. Couldn’t get comfy. The only time I’ve been on my own in A&E before is when I took an overdose – the latest in a line of them in my later teens – and my mother flat-out refused to accompany me. I resented her at the time, but I understand why now. I tried to quell the panic by browsing the internet on my phone, reading boring BBC news stories about absolutely nothing, trying to pretend everything’s okay.

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Also, there was an added fear. One I haven’t mentioned to anyone, not even the doctor; I figured anything abnormal would show in the blood and heart tests. A few days ago I was in so much pain – agonising, screaming pain – that I caved, and begged everyone I know to find me some ‘proper’ painkillers. Z turned up with some 30mg co-codamol and, later, a strip of tramocet. Now, I’ve spoken about my little opiate problem before, but recently it’s been pretty dormant. I haven’t felt the need to self-medicate or block things out with tiny white pills.

However, fever doesn’t work well when you’re trying to be sensible. I accidentally took far too many painkillers; I don’t know how or why I did it, just that I took more than three times the recommended dose. It was in no way a suicide attempt, because I wasn’t truly aware of what I was doing. I just wanted the pain to stop, so I could finally get some sleep.

Then, days and nights of vomiting. Sweating; that horrible chemical-tinged sweat you get with opiates. Hallucinations and awful nightmares.

So that’s how I found myself curled up on a hard bed in A&E, trying to explain my ridiculous medical history, clutching an emesis basin and hating everything hospitals are.

I just can’t cope with them.

They scare me.

 

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Maybe I’m just like my father: of psychiatrists and psychotherapy

Psychotherapy is a general term referring to therapeutic interaction or treatment contracted between a trained professional and a client, patient, family, couple, or group. The problems addressed are psychological in nature and of no specific kind or degree, but rather depend on the specialty of the practitioner.

Psychotherapy aims to increase the individual’s sense of his/her own well-being. Psychotherapists employ a range of techniques based on experiential relationship building, dialogue, communication and behavior change that are designed to improve the mental health of a client” – Wikipedia

woman-in-therapy-session

In my experience, most mental health centres and hospitals look the same. Red-brick buildings with NHS-standard signs directing patients to different departments, a row or two of (usually blue) chairs in a soulless waiting room, and old copies of Lancashire Life stacked on a low table if you’re lucky. Mazes of corridors and doors which are always kept locked. A buzzer or bell to gain entry or allow exit. Sometimes the paint on the walls differs, but it’s usually a palette of beige, pastel green or pastel yellow. “Calming” colours.

They inevitably make me think of the contents of an unwell baby’s nappy.

Our local mental health centre is, handily, in my town. It was recently refurbished and is now very different from the brief glimpses I got when I was being hauled – twice – to a private room on suicide watch in my teens. Back then the entrance led to a huge staircase which dominated the entire hallway of what used to be a beautiful old building but which has now been added to so much that it’s lost most of its character. Now, the staircase has been remodeled and everything’s been painted an off-white. There’s lots of glass and bright posters. It almost feels like a primary school, except you’re always aware that there are people upstairs, being watched 24 hours a day in case they hurt themselves.

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I sat with my mother, and waited. As my legal appointee, she has a right to accompany me to any appointments and while I usually try to wriggle out of it… sometimes I need her. My fear of going back into the mental health system after over a decade of let-downs and damage inevitably took over, and I know I wouldn’t have coped on my own. As it was, I had a small panic attack when I realised the psychiatrist was stuck in traffic and would be late; if I ever needed control, it’s when I’m about to open up my fucked-up heart to a complete stranger.

I was mildly surprised that the psychiatrist I saw was a young woman. I’ve become used to stuffy old men in shirt and tie, peering at me over their glasses and shrugging off all my concerns as being “down to my age”.

Another blue chair. Another desk, another patient file. I’ve done this so many times that I may as well just record what’s said and play it at the inevitable next appointment a few years later. You see, I have a problem sticking with things, and I’ve already spoken about how I find it almost impossible to be honest when faced with authority. When everything becomes too much I cave in and accept professional help, but I either pretend nothing’s wrong, or never go back. It’s as though I want to help myself, but the process is too frightening. Therapy means a loss of control and a need to be painfully honest; two things I find almost impossible to deal with.

I explained to the psychiatrist that I felt I was too old to still be dealing with all this, and that the mental health system has let me down a lot in the past. Picked at my jeans and stared at the wall as I detailed everything; the panic attacks, obsessions, paranoia, the total lack of self-esteem, the drugs, the painkiller addiction, the times in my teens when I relied on stolen bottles of gin to get me through the night, the self-harm, the bulimia. As I spoke, I realised that honesty was never going to come easy; although I was forcing the words out with all my strength, I still held back. However, my stumbling confessions were enough to confirm the diagnosis of BPD, and to earn me a referral for psychotherapy.

chickentherapyhut

Specifically, I’m on the 18-week waiting list for CAT Therapy.

Cognitive Analytic Therapy (CAT) is a form of psychological therapy initially developed in the United Kingdom by Anthony Ryle. This time-limited therapy was developed in the context of the UK’s National Health Service with the aim of providing effective and affordable psychological treatment which could be realistically provided in a resource constrained public health system. It is distinctive due to its intensive use of reformulation, its integration of cognitive and analytic practice and its collaborative nature, involving the patient very actively in their treatment.

The CAT practitioner aims to work with the patient to identify procedural sequences; chains of events, thoughts, emotions and motivations that explain how a target problem (for example self-harm) is established and maintained. In addition to the procedural sequence model, a second distinguishing feature of CAT is the use of reciprocal roles (RRs). These identify problems as occurring between people and not within the patient. RRs may be set up in early life and then be replayed in later life; for example someone who as a child felt neglected by parents perceived as abandoning might be vulnerable to feelings of abandonment in later life (or indeed neglect themselves).

It all sounds like much of a muchness, and initially I was reluctant to even consider it. Most experiences I read online leaned very much towards the negative, and the idea of writing a “goodbye” letter to my therapist is an odd one; I usually leave therapy sessions by simply walking out and never coming back.

However, I’ve given it a lot of consideration over the past few days. Knowing CAT is a “cheap” therapy is a concern; does that make me a snob? I’ve decided that a minimum of eighteen weeks is a long time to think it through, and I do have the safety net of being able to leave whenever I want; I’m not being forced into psychotherapy. It’s my choice, and I think at least giving it a go is the right decision.

I think.

I hope.

_______________________________________

Alcohol and Tramadol

Washing ashes down the sink,
as though it would always be so easy
to wash away memories of you
and everything you meant to me.
Finding all the lovesick notes,
crumpled and faded under your bed
- at least, I imagine all the words I wrote
now mean as much to you as the words I said.

Words like “I love you”, I know mean little to you now
soulmates no longer, or that’s how it seems
all the carefully constructed speeches and promises
now lie strewn around us, torn apart at the seams,
and the one thing you never considered
was that I could be hurting as much as you
that I could be regretting every last moment
I could be hating myself for everything I put you through.

Hurting myself to forget the pain,
and pills to help me sleep at night
how could you believe that I knew it would happen;
and that this was something I thought was right?
Alcohol and Tramadol,
quick fixes which never seem to last
uneasy sleep and confused dreams,
and morning always comes too fast.

I slide further downwards and I don’t want to stop,
this is all I believe I ever deserved,
bittersweet lullabies and a twist in the tale
how can you say that I never cared?
Three weeks by the window,
three weeks on the floor,
21 days in the corner,
1260 minutes by the door.

Waiting impatiently for your call,
knowing I could mean so little to you
compared to my feelings, which never changed
despite everything we put each other through.
Despite it all, I still reach out,
I still never felt safer than I do by your side
I still think of you last thing at night
I still want you, and only you, to be mine.

Washing my hands but I’ll never come clean,
I’ll always be stained by all that I did
it was never as easy as you’d like to think
I always told you the truth, more than I hid.
Lovesick letters, secreted in books,
where you’ll never see my weakness for you
I kept the letters, the pictures, all the photographs
despite everything we put each other though.

(c) 2008

2008 was the year of poetry. Clichéd late-night ramblings fueled by painkillers and cheap bottles of red wine. Cigarette burns on the PVC bedroom window frame and knocking myself out with tranquilisers to hide from the inevitable breakdown. Things with O were coming to an end and his habit of breaking up with me then coaxing me back into bed – speaking of how he couldn’t live without me – confused everything to the point where I fell apart entirely. Poetry was the only way I could stay in reality. 

I cheated on him; slept with a 45 year old man. He cheated on me; throwing himself at a nineteen year old. Everything was messed up. We never recovered. 

I’m glad. 

I have S now.

Sisterhood of the World, and 100,000 views.

It’s been another non-day; watching old episodes of ER while playing Bejeweled and smoking, trying not to fall asleep in an attempt to rearrange my ridiculous sleeping habits. If you’ve been reading for a while, you’ll know that I often suffer from insomnia, interspersed with periods of extreme fatigue which can leave me stuck in bed for days, sometimes sleeping for fifteen hours or more. Lately I’ve been sleeping late and staying up until the early hours of the morning, getting stoned and, well, I don’t know how to describe it. Half-sleeping. I’m awake, but I dream; I don’t know any way to express how it feels, and I just hope somebody knows what I mean. It’s a sort of fugue state, but not borne from any depression. I’m very anxious, but happy on the whole.

I just lie there and think. Mostly about stupid stuff; crazy plans and thoughts inspired by dope and tiredness. Sometimes I imagine having conversations with S and finally admitting to all my failings with the codeine and thoughts of self-harm. I know I planned to speak to him about it at the weekend, but it just never seemed like the right time. Is that an excuse? I don’t know. Everything was just so nice and happy and lovely, and I didn’t want to bring anything down with my issues.

I was sitting around wondering how I could make a post about the weekend, still stuck in the “how do I start this?” dilemma. I procrastinated for a while, reading through recent comments I haven’t had time to reply to, and saw that Gypsy has nominated  me for the Sisterhood of the World award; giving me a much-needed happiness boost and also the perfect excuse for actually writing about what happened since Friday. The rules for the award are much the usual:

1. Thank the giver
2. Post 7 things about yourself
3. Pass the award on to 7 other bloggers and let them know they’ve been nominated
4. Include the logo of the award in a post or on your blog

So, number one; the thing I want to say here is that Gypsy was one of the first bloggers I followed, way back when I didn’t have a clue what I was doing. Reading about her life – in the wonderful detail she uses – showed me for the first time in life that there are others out there like me; others who think like I do and have the same struggles. Before reading about her experiences with BPD, I truly thought I was alone. She’s a wonderful woman, and somebody I would love to meet one day. She’s worth a million pounds and more in the blogging world.

As for the seven things, this is where I will write about my weekend. Good cop-out, eh?

1. On Friday afternoon, Halfway Between The Gutter and the Stars reached 100,000 views. I’ve been writing this blog for a little over a year, and I never, never expected to reach so many people. For a long time, my stats showed that views were almost entirely from comments I’d made on other blogs. It averaged around 30-60 a day, and I thought that was a lot. Sometime around six months ago, visits picked up to the point where I now average 600 views a day; not bad for a little diary written by a crazy girl from a small town in England. As much as it may sound like I’m throwing my ego around, knowing this blog reaches so many people – from so many different countries  - is a happiness I can never begin to describe. I always wanted to be a writer, and now, in a small way… I am. I write, and people read. They choose to read. I’m sure I don’t have to tell you how grateful I am for every reader; even the ones who look in just to snoop. I’ve decided that any publicity is good publicity.

Thank you. All too often, I’m terrified that I’m doing the wrong thing by putting the bare roots of my life out there.

2. For most of my life, I’ve avoided social gatherings; this much is obvious from what I’ve written in the past. I’ve always been that way – as well as having anxiety problems, I’m also naturally shy – and for the longest time it didn’t bother me. I was happy being mostly alone, because the world stretched ahead of me and I thought I had forever to make mistakes and sequester in my bedroom. However, for the past five years or so I’ve felt an unbearable yearning to be like everyone else – or at least, everyone else as I see it – and I’ve craved the normality of socialising.

Still, I’ve shied away from actually taking that step, because my insecurities hold me back; telling me I’ll make a fool of myself or I’ll be laughed at for my weight or clothes. So making a move towards entering that world is a big deal for me, and I managed it this weekend.

3. Although I was with people I knew – S, Z, her boyfriend and a friend – I was going to meet a lot I’d never spoken to in person before. For me… it was like running at the wall and having it break apart before me; meeting others from the internet is always difficult, and a large gathering… eh, it was difficult. I nearly backed out so many times, but I wanted to see if I could achieve something big. A long time ago, I joined an online forum for body modification; I think I was having trouble with one of my first piercings and needed advice before I hyperventilated. Over the years they’ve held regular meets, and I’ve always made my excuses; usually pretending I’m too skint or have made other plans. The usual lies.

However, something inside me wanted to go to this year’s Manchester meet. Z was already going, which gave me the courage to accept the Facebook invite.

I went.

4. For the first time since I can remember, I got a train on my own. Although S came with me, he left early; we’d originally planned to stay in Manchester until 5pm then head back into town for a friend’s birthday meal. Despite all my fears and reservations, I really enjoyed myself at the meet and I think S could tell I was comfortable drinking half a pint (Lyrica and alcohol; a bad combination) and chatting, so he suggested I stay if I wanted to. Anxiety aside, I was giddy from the tiny drink and general atmosphere, so agreed. I decided transport worries could wait until later.

Of course, things didn’t work out as planned. I missed my train by two minutes, and even though there were only a few platforms at the station, I got lost and ended up on the wrong side. By the time I got back to the right place, I’d started to panic. Going to the station entrance and finding everyone didn’t even enter my mind; my head told me to sit down and freak out, so I did. It’s at times like this I truly believe my mind and I are separate entities, held together by a strange glue neither of us wanted.

Retreating to the women’s toilets, I sat in the locked stall and allowed myself to fall apart. Although the station was almost empty at 22.30, a middle-aged couple and a few drunk men – staggering and shouting like banshees – were nearby and I couldn’t let them see me freak out. I’ve cried at too many station platforms in the past.

An hour later, after narrowly avoiding vomiting Snickers cocktails all over the waiting room floor, I got on the train, tucked myself away in a walled-in seat, and distracted myself by reading the BBC website on my phone. Mobile internet is a wonderful invention. When I finally got home another hour and a half later, S met me at the door with a hug and a take away vegetarian pizza. I could have kissed him. I did.

5. On Sunday afternoon, S and I sat in the garden as usual, shouting for the sun to come out from behind the clouds and me getting happily stoned while he drank cans of Kopperberg. In the midst of geeky conversation I mentioned how it’d be nice if I didn’t have to go home that night. S replied by saying “you don’t”, and so I sent my mother a text saying I wouldn’t be home until Monday morning. In an ideal world I shouldn’t have to tell my mother at all, nor fear a phone call demanding I come home (it’s happened), but I’d never say no to an extra night spent with S. He cooked dinner for me and we cuddled together before falling asleep. In the morning, as he scrambled around trying to wake me up and have a shower before work, I lay in his warm bed, pillows smelling of his hair and deodorant, and felt okay. Properly okay. Despite the train debacle, I’d really enjoyed spending time in a social group; not only that, but some agreed to come to our flatwarming party. Two messaged me on Facebook afterwards to say how lovely it was to finally meet me, and one offered a bed at her house if I ever wanted to spend the day in Manchester together.

6. Flatwarming party? Yes. I’ve kept this quiet, partly because things don’t tend to work out for me, and partly due to the whole fraud allegation mess. I wouldn’t be doing anything wrong by moving in with S; I’d still be just as in need of DLA, and I’d still need financial assistance to pay for the extras being disabled causes. Nothing would change, and it’s not income-based. I’d still need the same amount of care. Still, I worry. Being accused of wrongly claiming benefits has terrified me.

We’ve been told that the flat owned by a friend’s mother is being rented out, and we can move in around the end of the month. S and I are going to be living together soon.

I knew I wouldn’t make it to seven things, and it’s probably good that I couldn’t be bothered writing more; this post is getting long enough. As for nominating other blogs… this bit is always difficult. The award is called Sisterhood of the World; I’m not entirely sure what that means and who deserves a nomination.

I know “strong women” is always a bit of a cliché, but I’ve chosen to award this to the bloggers who keep on writing and fighting, even through adversity.

Stolen Crayons

Faith, Hope and Chocolate 

theicedsun

Letters to Dom

The Quiet Borderline

Anonymous Unidentified

witheringtulip

These bloggers all inspire me in different ways, and all too often I can identify with their words. They use language I like, and write beautifully. Most importantly, they all have their struggles to carry, yet write about them with such elegance and honesty.